The undersigned organizations, representing cancer
patients, physicians, and researchers, appreciate the
opportunity to comment on the proposed rule on Medicaid,
Children’s Health Insurance Programs, and
Exchanges. Our organizations are
committed to the implementation of the Affordable Care Act
in a manner that permits informed consumer decision-making
with regard to insurance options and also encourages the
delivery of quality care. We appreciate the
considerable challenge that the Centers for Medicare &
Medicaid Services (CMS) faces in implementing new health
insurance options in a way that balances cost and
access. In the agency’s decisions to grant states
considerable flexibility in imposing cost-sharing
requirements for the expanded Medicaid program, it has
tilted toward cost containment in a way that puts cancer
patient access to care at risk. Our comments
address that issue and additional concerns of cancer
patients and physicians.

Cost-Sharing Requirements

The expanded Medicaid program holds great promise for
providing cancer survivors access to care that many have
not received at all and others have received too
late. We anticipate that many who are living with
cancer as a chronic disease and who may have suffered
interruptions in employment may find Medicaid to be a
life-saving insurance option. These individuals may
need complex multi-disciplinary care for the management of
their cancer and the late and long-term effects of cancer
and its treatment.

The cost-sharing flexibility that CMS has provided the
states may undermine the effectiveness of the Medicaid
expansion as a viable option for those with cancer by
increasing cost-sharing responsibilities and putting
quality care out of the reach of enrollees. The
proposed rule would permit states to boost cost-sharing
for non-preferred drugs to $8 for those with family income
at or below 150 percent of poverty and 20 percent of the
cost the agency pays for non-preferred drugs for those
with incomes above 150 percent of the federal poverty
level. The cost-sharing requirements for
inpatient stays would be 50% of the cost the agency pays
for the first day of care (for those at or below 100
percent of poverty), 50% of the cost of the first day or
10% of the total cost the agency pays for the entire stay
(for those with incomes at 101-150% of poverty), and 50%
of the cost the agency pays for the first day of care or
20% of the total cost the agency pays for the stay (for
those with incomes at or above 150% of poverty).

The preferred drug list might not include the drugs that
are necessary for treatment of a Medicaid patient’s
cancer, and the patient who is living paycheck to paycheck
might not be able to afford the cost-sharing for the
non-preferred drug (or in the case of cancer patients,
cost sharing for multiple drugs, all considered
non-preferred). A similar situation might exist for
inpatient care. Cancer patients have repeatedly
expressed their interest in receiving their cancer care in
outpatient settings, but inpatient care is required for
administration of certain chemotherapy agents and in some
situations for management of serious
side-effects. Inpatient care is also necessary
for those patients whose cancer care includes
surgery. The cost-sharing requirements for this
treatment option may be crippling, and as a result the
patient will seek other options in the place of inpatient
care – options that may not be appropriate or adequate for
treatment of their cancer.

The proposed rule contains two provisions that might offer
the patient some protection if the state imposes the most
aggressive cost-sharing requirements, but the protections
are inadequate. The overall out-of-pocket cap on
spending will offer protection too late in the care
process, and patients will make decisions about specific
episodes of care without consideration of their ultimate
out-of-pocket protection. States are required to
define a process whereby a physician would recommend that
a non-preferred drug is the best treatment option and that
no preferred drug is an acceptable alternative, but the
proposed rule does not set appropriate standards for this
process and as a result it is not clear that such process
would offer protections in many states.

The balance between cost and access must be adjusted with
regard to state flexibility on patient cost-sharing in
order to protect patient access to appropriate and high
quality care. Essential Health Benefits

According to the proposed rule, the alternative health
plan would be designed by the choice of one of four
benchmark plans, with coverage of the chosen plan
supplemented if necessary to ensure that all essential
health benefit categories are included. In addition,
whereas the preamble to the rule says that all drugs of
the companies that participate in the drug rebate program
should be included in the alternative benefit plan, that
language is not included in the language of the proposed
regulation. We recommend that the regulatory
language be amended to correct that omission.

The agency also says that the states have the flexibility
to “adopt prior authorization and other utilization
control measures, as well as policies that promote use of
generic drugs.” There is the potential for
conflict between the prescription drug coverage of an
alternative health plan supplemented by the state’s
essential health benefit standard and a drug benefit that
is consistent with the state’s Medicaid program. We
urge clarification of the coverage standard, accompanied
by protections to ensure that patients can appeal
utilization controls that might prevent them from
receiving necessary medications.

The Medically Frail

We commend CMS for the definition of medically frail and
the inclusion in this definition of “individuals with
serious and complex medical conditions.”
Cancer survivors managing complex treatment or a
complicated set of late and long-term effects would fit
this definition and would be exempt from mandatory
enrollment in an Alternative Benefit Plan. We
support this definition, which would permit those with
serious and complex medical conditions the choice of the
most appropriate benefit plan for their special and
complex health care needs.

Coordination of Eligibility and Appeals Processes

We commend CMS for seeking advice about the eligibility
and appeals processes from many stakeholders, including
states, consumer advocates, and plain language
experts. The advice is reflected in the solid
progress toward a coordinated system for determination of
eligibility for health coverage and appeals of eligibility
decisions. We regret that the consolidated
eligibility process will not be in place until 2015.
We urge that every effort be made to honor the date of
January 1, 2015; we do not support the extension of the
deadline until October 15, 2015, for a consolidated
system. Until the implementation date of January 1,
2015, it is our hope that the use of coordinated content
about eligibility will help individuals and families
through an eligibility and enrollment process in which
they may receive notices from Medicaid, the Children’s
Health Insurance Program, and the Exchange.Certified Application Counselors

We support establishment of the “Certified Application
Counselor” program and the requirement that every exchange
have such a program. We also approve of the proposed
standards for training and performance for Certified
Application Counselors, which will help to ensure that
these counselors provide effective assistance to
individuals and families evaluating health insurance
options. We urge CMS to address the relationship
among Navigators, Assisters, and Certified Application
Counselors. In addition, although it is outside the
scope of this regulation, we urge the agency to offer
guidance about possible funding streams or mechanisms to
support the Certified Application Counselor programs.

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We appreciate the opportunity to comment on the proposed
rule including many core standards to guide the operation
of the exchanges and the expanded Medicaid program.